Equity, not equality, will advance cancer care

The news of CRISPER-engineered baby points to how incredible the speed of innovation can be — albeit often unconstrained by traditional bioethical principles. In cancer research, too, innovative targeted therapies or “precision medicine” have been making headlines over national and international newspapers. Given this constant coverage, it is convenient to believe that we are on the right track towards advancing cancer care research. At the technological and individual, maybe so; at the population level, not so much.

However, unlike other social policies, health care affects everyone — regardless of their financial, social, or economic station.

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The current challenge in cancer care research is not of equality — for the most part, every patient is treated equally; it is that of inequity — treating every person fairly and being cognizant of the impact of societal circumstances on individual health.

Cancer care research is plagued by inequity. And this process starts early: at the time of enrollment of patients for clinical trials in. When new cancer therapies are tested, or being developed, the process is far from being inclusive. Medical literature is brimmed with evidence on how minority patients and women are constantly under-represented in clinical trials. When cancer therapies, or treatment regimens, are developed for a demographic that does not represent the larger society, one should not be surprised to learn of weakening disparities in cancer care.

And there are real-life consequences of this inequity. At the individual level, a study from the University of North Carolina, Chapel Hill, revealed how novel “targeted” cancer treatments did not offer comparable benefit for black and white patients with kidney cancer. The researchers reported that black patients “maintained a survival disadvantage” even after accommodating differences in age, sex, income, and standard of a medical facility.

At the population level, a similar effect has been observed: minority patients, low-income patients on Medicaid, patients who identify as black and Hispanic are less likely to receive preliminary investigations — such as tumor testing — that are prerequisites for accessing cancer treatments. When patients are unable to afford or access these investigations, they miss out of gaining the benefits — all of which exacerbates health inequities.

Again, diseases do not exist in a clinical vacuum. According to the CDC, social determinants of health account for 75 percent of our health. And this also applies to how the benefits of cancer research disseminate in society. Non-clinical factors, including patient earnings, location of residence, and availability of quality medical centers also affect access to cancer care treatments. For example, a recent study by our colleagues at Harvard Medical School revealed how novel cancer drugs (Bevacizumab, in this case) were three times more likely to be used in more advanced clinical practices. This finding is particularly troubling as evidence has shown time and again how these factors pose a particular disadvantage to rural, and often low-income, cancer patients.

To be sure, the National Institute of Health (NIH) has implemented policies that require equitable inclusion of women and minority populations in federally-funded research projects. However, recent scientific investigations that evaluated this policy have revealed an abysmal rate of compliance in peer-reviewed publications, reporting that “NIH policies have not resulted in significant increases in reporting results by sex, race, or ethnicity”.

To change this, cancer care researchers will need to be more thoughtful and unequivocal about the importance of integrating equity in their research portfolios. Moving forward, it would be crucial to start cancer research projects with an open-minded conversation on why, and how, equity benefits the wider public. Peer-reviewed medical journals can also require a brief statement on how the research project ensured equity in patient participation. Academic Medicine experts have also suggested that robust guidelines in medical journals for authors to report clinical trials results by sex, race, and ethnicity would be productive.

Inaction on part of cancer researchers would equate complacency. To truly live up to Dr. King’s vision of a just society, we can start with incremental changes in conducting clinical research that ensures equitable benefits for all. The alternative is unacceptable.

Junaid Nabi, MD, MPH is a public health researcher at Brigham and Women’s Hospital and Harvard Medical School, Boston. He is also a New Voices fellow at the Aspen Institute, Washington, D.C. Twitter: @JunaidNabiMD. The opinions expressed in this article are solely my own and do not reflect the views and opinions of Brigham and Women’s Hospital.